Essential Thrombocythemia: Looking for information and support

Need to say they were in the 900’s

You and I are pretty much in the same place I also take 1500 mg of hu daily and a full dose aspirin. I was diagnosed last October. My platelet count is almost the same as yours. I am 74 years old.

I’m 63. Did you get tested for Jak-2 mutation?

Yes, and I'm positive.

I just found this 'connect'. I am 63, was diagnosed with ET when 58. Took low dose aspirin for a couple of years. Then, I developed a clot in my femoral artery. I am now on 1000mg of Hydroxurea 6 days a week, and 1500mg, 1 day a week. Platelets are under 300 and stable. Very few side affects on meds for me. discolored nails, fatigue, so I feel lucky. Also taking 325 mb of aspirin to keep blood from getting sticky. The clot was very scary. It dislodged, and went down my leg and landed in the top of my foot where it was stuck. My foot was changing colors......... Again, I was very lucky. Went to ER and then Vascular surgeon who did testing. He prescribed and Xarelto in two weeks it dissolved. Now, I watch for symptoms all the time. I'd guest I'd rather have med side effects, than the unwanted chance of another clot somewhere. Appreciate you all.

I have been on hydrea for three years now. My platelet count went from 676000 down to 426000.
The medication causes no side effects . It works.

I have been taking .Hydrea for 4 years, for ET. My Hematologist said to take them before bedtime and it would lower the risk of nausea. It has worked well for me. Good luck

Unless there is a need to get platelets down very fast, hematologists now try to start patients at a low dose and work up. This reduces side effects. I was in 800s and started with 500 mg per day. After a year, platelets had gone to 600s, and another 500mg dose was added 3x per week. I stay in the 400s now, and hemo says that's fine.

That said, we all have different clot risks based on age, smoking, mutation type, etc. So there is no one size fits all dosing strategy.

I do think that somebody in the 500s prescribed 1000 mg right off the bat should certainly ask why they couldn't start with a lower dose and work up as needed.

I was diagnosed with MDS in 2021. In March 2023 my platelets shot up to over a million. My doctor ordered a blood test and I am JAK2 positive. They say it's very rare and weird that this happened.

I started taking 1000 mg of Hydroxyurea daily. I was so so scared to start taking it, but I have had absolutely zero side effects. I am so thankful.

My platelets are very slowly coming down. Was 1179 and now 1063. This is over the course of a month or so.

Just had another bone marrow biopsy and am waiting for results.

Best of luck.

Don't assume your will have side effects from Hydrea. My platelets were 600s for 10 years and hemotologist just watched it. No treatment. Then I ended up in hospital with serious pulmonary embolisms. New hemotologist tested for JAK2 and it was positive. Immediately began 500 mg of Hydrea daily. Now in normal range with no side effects BUT I do have serious condition resulting from the PEs. Do what needs to be done to prevent PEs!!!!!!!!